Why Do Some Ill People Want to Die?
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This loss of community appears to be a core feature of loss of self. The finding doesn't settle the debate over whether doctor-assisted suicide is right or wrong. It does something far more useful: It points to ways that end-of-life care can be improved.
Robert A. Pearlman, MD, MPH, is professor of medicine at the University of Washington and director of the Northwest Ethics Center for Veterans Health Care, in Seattle. He is co-author of an editorial appearing alongside the Lavery team's study in the medical journal The Lancet.
Pearlman says end-of-life care needs to address the issues of loss of self and loss of community. He argues that healthcare research should look for ways to help people deal with the isolation or loss of meaning that comes from the loss of community that patients described to Lavery. Pearlman also endorses Lavery's approach of listening to patients instead of asking their doctors.
"Patients can be our teachers, as opposed to assuming we understand their experiences," he tells WebMD. "There is the need for healthcare providers and families to hear about patient experiences so they can better address them and do a better job in promoting quality of life and quality of dying."
Lavery points to two patients. One, a man at death's door, was a community activist who remained involved from his hospital bed. He strongly believed that doctor-assisted suicide should be legal, but did not want it for himself. Another man was far less ill, but was rejected by his family when he told them he was gay and was rejected by his lover when he told him he had HIV. This man wanted very much to die.
"Caregivers must be attentive not only to the physical side of illness but also to the meaning of what dignity really is," Lavery says. "Dignity has to do with integrity of the self. You cannot expect that people will lie isolated in a bed and not experience profound changes in how they perceive themselves. As a response to terminal illness we should ensure highest quality not only of technical care for symptoms, but for community. We should provide a role for patients and keep this role for them until they die."